Fairness

About a month ago, author David Rakoff died after his second fight with cancer.  He was only 47.  You may not know his name, but anyone who listens to This American Life will recognize his voice.  As I was driving home from work the day after his death, I listened to an interview taped after his diagnosis.  Knowing his fate, he was asked about the thought I think passes through the minds of most who suffer some tragedy:  Why me?  Why should a man so young, so talented, be doomed to be taken from a world where that talent is rare?

His simple answer rang true:  Why not me?  "The universe is anarchic and doesn't care about us," he said, "and unfortunately, there's no greater rhyme or reason as to why it would be me. And since there is no answer as to why me, it's not a question I feel really entitled to ask."

While Asher was in NICU, responding to my own pitiable mind with "Why not me?" really helped.  I saw that believing the world was treating me unfairly required also believing that someone else deserved such treatment more than me.  Inserting that one word - "not" - shook me out of my state and allowed me to carry on, to be present in those moments.  It's a trick I've since suggested to clients and discussed with friends.  Recently, I really hoped it would help one friend in particular.

This friend's baby girl was born under somewhat similar circumstances to Asher.   She received the cooling mat treatment, and when I had the honor of meeting her, she reminded me of my son in those early days.  Seeing her gave me hope, and I tried to pass that feeling on to those friends.  I also tried to pass on some of what I'd learned to the new parents, including how I re-framed my own self-pity.

Last week, this baby girl passed away.  Her parents' pain morphed from something I could relate to into a mere concept, one beyond my ability to understand, let alone write about here.

Among the waves of my internal responses came a return of my mind's attempts to apply fairness and order to the universe.  Only, this time, the question had changed into something I've found far more impenetrable: "Why them, not me?"

Logically, I think the resolution to this second question is contained somewhere in the resolution to the first.  Yet, as I'm feeling so sad for them, that answer is far from satisfying.  It feels small and cold, and while my head still believes it to be true and thinks it can help sometimes, my heart regrets even suggesting it to a friend who's now mourning.

*****

Further complicating the nest of emotions surrounding the past few weeks is how well Asher is doing.  After we got the news about our friends' daughter, Marissa and I sat quietly in our living room.  Asher was between us, lying back-down on his play mat.  Processing the tragedy, I was staring off into nothing when I saw a twist of movement in the corner of my eye.  Asher was now on his stomach.  An important developmental milestone, rolling had been a physical therapy goal of his for a while, and he had just done it on his own for the first time.  Marissa and I looked at each other, shocked, before the bittersweet irony of the moment set in.

 We've gotten great encouragement from his physical therapist, who's seemed very impressed with most everything she sees.  Rolling is easier from stomach to back, happening twice today in quick succession, though back-to-stomach has only happened a few times.  He holds his head up pretty well, even if he has his drunken bobblehead moments.  Some of these things may not be exactly on time or done perfectly, but if you put him in a line-up with other four-month old babies, you'd be hard pressed to pick out the one with the traumatic start to life.

And, of course, he's as cute as a baby's ever been.

Last week, Grammy and Pappy White came for a week-long visit... 

He laughs a lot, especially when we play and sing our songs, but he's also starting to laugh on his own at things he thinks are funny.

Hopefully I'm not being naive, but the way Asher takes in and reacts to the world makes me really optimistic that he'll be just fine intellectually.  Quick smiles at songs we sing regularly show me he remembers them.  He can figure out how to do something, such as work a toy or how to roll over, then quickly repeat what he's just learned to do.  Mostly, though, there's just a look in his eye, an alertness that says he's soaking in and learning from his environment.  Even if he is just a little behind physically, my fear of not being able to have an intellectual relationship with my son seems like a distant memory.

I'll finish up this post with something Asher might hate me for when he gets to a certain age.  We have a nightly routine that starts with a bath, which has become daddy time.  Splashing might be his favorite thing in the world to do, and as you can see, he's very good at it.  Maybe we're training the next Michael Phelps.  

To Future Asher (and his girlfriends I'll be showing this to in 16 years or so): I wish YouTube would let me add one of those blue dots over your privates.  But only because I think that'd be even funnier.

Smiles

Marissa's grad school roommate, Amber, flew in for a long visit last week, all the way from Chicago.  The day she arrived, Brad came over for a family dinner, and during dinner prep began telling me about a hiking trip he and Thompson were planning for the next day.  Following the Black Mountain Crest north from Mt. Mitchell, it's a beautiful, rugged trail that I've only done once for my "bachelor party".  As I'd resigned myself to a life devoid of backpacking until at least the fall, and maybe next year, I listened with a "sounds great, have fun" attitude.

It was then that my wife, mother of a demanding two-month old baby, piped up and said "That sounds fun, Zach, you should go!"  Confused, my jaw hung lower and lower with each second that passed without a punch-line.  Granted, Amber would be a big help, but a friend is not a co-parent.  When I eventually accepted that she was serious, I quickly started planning the trip with Brad before she could change her mind.

What woman does that?  Marissa, that's who.  The same woman whose boundless energy and patience leaves me in the dust day after day.  "Transformation" is too strong a word for what motherhood has done to her, because you could always see a strong mother in her.  Back in college, after the first extended period of time I spent with her, I remember saying to a friend, "I'm not sure if I could ever date Marissa, but I'd want her to raise my kids."  (Turns out I could date her, too.)  Now, it's as if she's the same person, but with a new button, one that only Asher can push, and doing so injects her with the energy, drive, and focus she needs to be an amazing mom.

An example of her motherly predisposition:  As a young child, Marissa says that, in addition to being fiercely defensive of her baby dolls, she would "breastfeed" them.  Only when I think about this fact do I get truly disappointed that breastfeeding hasn't worked with Asher.  It's unfair that someone with such a strong drive to mother is denied that most mothering of acts.  Yet that's her lot, and on the whole, it feels normal now.  Life would be easier with breastfeeding, but we've managed to incorporate pumps and bottles into a routine that works.

The biggest factor making this and every other aspect of our lives easier is a generous gift from Asher, one that, I'll warn, might drive you parents to throw the nearest blunt object at your computer monitor.  Most nights lately, Asher sleeps from sundown to sunup.  I sleep all night, and Marissa gets up once to pump.  It's amazing.  He's also chilling out, having longer stretches of calmly absorbing the world, and mostly limiting his "happy hour" to right before dusk.  More and more smiles are appearing, and in the past few days, our favorite Woody Guthrie song has even gotten some quasi-laughs.

Clearly, all this helps daddy's sanity, but it's also great for his brain.  Sleep is the best time for his brain to repair any possible damage, while being calm mean he can learn, and maybe get in some homework from his physical therapist.

Most of what we work on for PT is just encouraging him to do normal baby stuff using both arms and legs.  The primary concern is still about cerebral palsy and whether or not he'll have full use of his right arm and leg.  We'll put him on a ball on his stomach and roll him around, encouraging him to lift up his head and use both his arms to stabilize.  Or, we'll try to get him to grab on to a toy and track it with his eyes.

His favorite, though, is his funhouse mirror with toys that dangle in his face when you hold it over him.  He's mesmerized by his own reflection, sometimes staring at it for half an hour while batting and grabbing at the toys.  It's baby catnip, but it's also good for his brain.

At first, his right hand would stay closed much of the time, letting his left do most exploring of toys, my face, or whatever was in front of him.  More and more, though, his right hand joins the party.  If you lay him on his stomach, you can tell his left arm is much better at holding up his body than his right.  He leans on his left elbow, while his right is often stubbornly sandwiched beneath him.  Still, we feel like he's made a lot of progress on this, and see no reason he can't keep it up.

*****

A couple weeks ago, we went back to the NICU.  A social worker there called us about a family whose baby, Zander, had gone through something similar to Asher, and she asked us to meet with them for peer support.  On our way there, I remember almost looking forward to seeing the unit again, like some kind of reunion.  Being there, though, I was reminded of how easy it is to let your mind slip back into negativity.  Asher started wailing and couldn't stay in the room with Zander, so I paced the halls in mostly unsuccessful attempts to calm him.  I noticed that, after being in the NICU and hearing Zander's story, Asher's cries made me worry like I did after our team meeting from hell.  Was he crying because of his brain injury?  Because he was in pain?  I wanted to go home.  The NICU saved my son's life, and maybe his brain, but there, he is sick.  At home, he's just my son.  

I wanted Zander and his family to go home, too.  Their mourning felt deep, and I wanted them to have a chance to move on with their lives, the way we have.  Later that week, they got that chance.  If you'd like to help Zander, Hope and Ray, his grandma is trying to raise funds for an expensive trip south from New York so that she can meet her grandson.  You can donate by clicking here.

Nine Weeks Old

This is the hardest thing I've ever done. Asher's birthday was the hardest thing that's ever happened TO me, but I didn't have much to do. Now, it's all up to me and Riss. And it never stops.

Asher's started appointments with a physical therapist who comes to the house. I wasn't at the last one, but Marissa was told the most important thing we need to do is keep him calm. He was apparently too upset that day to do any therapy, and the time was spent unsuccessfully trying to console him. The therapist that day described him as a very tense baby.

Much of the time, Asher just looks uncomfortable in his own skin. He writhes and claws around like a demon is trying to get out. It's usually possible to console him, so I don't think we could call it colic, but it often takes a lot of work and a long time. Before something works, we have to try every trick we have: walking, feeding, pacifiers, going outside, going inside, diaper check, another diaper check.

These are all things most parents have to deal with. Any good parent asks themselves, "Is this normal? Is this a problem?" For us, added to that has been worries about his condition. He's a tense baby. Would he have been that way regardless? Is it because the antibiotics messed with his stomach? Or, is that because he has brain damage? Every worrisome thing he does is colored, even if slightly, by these thoughts.

Before being discharged from NICU, we had to watch a video about shaken baby syndrome. Arrogantly, I dismissed it, saying "Yeah yeah yeah, don't shake your baby, I got it." After all, who would do such a thing? I really don't think I'd ever let myself get to the point of doing something so terrible. I'd set him down and walk away first. But, like I've heard from other parents recently, I know now how it happens.

Part of that arrogance came from having never heard him cry. Now, he's cried so much that he lost his voice for a few weeks. It's just starting to come back. Instead of desperately hoping he'll cry, I can barely remember what it was like to have him lay quietly all day, patiently waiting for feedings that were precisely three hours apart and between 100 and 120ml each time.

I don't know what I'd do if I didn't have Marissa. Single parents have rocketed to the top of my respect list - it seems impossible to do it well.

*****

I wrote what's above a couple weeks ago, on Father's Day. As you can see, it was a rough one, maybe the worst. Things have gotten much better since then. Last night, Asher slept essentially the entire night through. Nights have been one thing that's been relatively easy this whole time. He doesn't stay up screaming, and goes back to sleep pretty quickly after eating.

Little signs of smiling are starting to appear, as well as noises other than crying. Routines are being established, like Asher's nightly "happy hour", so named because it's when we could most use a drink. Mornings have been the most peaceful, and he's spending more time then and at other points in the day simply awake and taking in the world.

Last week was a busy one for doctor's appointments. First was the neurologist, who was concerned about Asher's right side being more tense than the left. The right hand tends to ball into a fist a lot more, and that leg kicks more than the left. It's possible this could be early signs of cerebral palsy.

The next day, he had an encouraging physical therapy appointment. They were happy to see Asher could calm himself more easily than in his last appointment, which needs to happen before any real PT starts. His right side was responsive that day, and really has been since then as well. We practice opening up his right fist more, hoping to teach his brain learns to do this on its own.

Last, we went to see a neurosurgeon on Friday. Back in NICU, one of the doctors was concerned about a Chiari malformation in Asher, where the brain stem actually protrudes out the bottom of the skull. If severe, it can require brain surgery. Luckily, it seems we won't have to worry about this, said the neurosurgeon. If Asher has such a malformation, it's so minor that it barely shows up on an MRI and likely won't cause any symptoms. With better MRI technology, doctors are finding these minor malformations are more common than previously known, but they're not usually a problem.

I've been wanting to blog for weeks now. When I started this, blogging was my therapy. Writing is easy when it's fueled by emotion. As that has fuel has thankfully run lower, so too has the desire to write, to say nothing of my new time constraints. But, I know how important Asher has become to his fan club, many of whom I've never met. I'm hoping it gets easier to keep you all updated as I settle into this new parenting gig.

Speaking of Asher's fan club, we've had a lot of really creative support through his ordeal, none more so than this little gem sent to us several weeks back:

Yours is the first face that I saw

I think I was blind before I met you

Now I don’t know where I am 

I don’t know where I’ve been

But I know where I want to go

That's our friend Chandra singing "First Day of My Life" for Asher.  [Wild applause!]

She's not the only person who's been inspired into song.  One thing I've learned about the Kent family is  what a good lyricist Asher has in his Grandma Gerry.  I think she's written songs for all her grandchildren, though Asher's is a bit different than her other works:

Oh, little Asher you can hear me!

Oh, little Asher you can see!

Oh little Asher how we love you!

Oh little Asher you cried for me.

Words by Grandma, vocals by Mom.

Other happenings, which have to be posted in bullet form, otherwise I'll never finish this post:

• Both my and Marissa's parents came and stayed for a week at a time.  Her parents cleaned our house top to bottom, while my parents finished off the patio I'd started with a fence and landscaping.  
• Asher had his bris at the house, with Brad and Kate as godparents, and Rabbi Rob, Asher's doctor, and Grandma and Grandpa Kent attending.  Obviously, a traditional bris wasn't an option, so a little pin prick did the trick.
• Asher's had a lot of visitors, which helps keep daddy and especially mommy sane.  Also helping in the sanity department has been his increasing ability to get out of the house without causing too much chaos.  He's had his first visit to the Bywater, a couple of restaurants, and, hopefully in a few minutes, his first soccer match in public.  Viva Espana!

Time to get working on that.  Until next time, world...

Act Two

If every day in the NICU passed like a week, since Asher's been home, the week has flown like a day.

Did you know babies are a lot of work? It's something I knew and accepted before Asher, but didn't fully understand why it was so. Now that we, not a team of nurses, are in charge of his round the clock care, he fills our entire day.  Especially with Marissa still pumping, even the times he's sleeping are spent cleaning the house, scrubbing his bottles and pumping gear, and trying to fit in all the old household jobs on top of that.

Asher's naps are also spent by us in a combination of relief and terror. We slink around the house like we're trying to evade a deranged murderer, knowing that one creaky floorboard, one stub of the toe could mean our demise.  Decisions to risk picking up his sleeping body make me feel like Indiana Jones stealing treasure at the risk of being crushed by a boulder.

He likes being outside.  We spent hours outside at a party for our friends Will and Katy, who are due in July, and Asher was calm and happy the entire time.  It helped that there was a deck full of people wanting to hold and talk to him (though this picture somehow makes it look like we ditched him).

He's a popular dude, and had a few visitors this week, including a turkey sandwich from Katy that apparently saved Marissa's life.

Asher had a few medical appointments this week.  We met with the feeding team, and were able to tell them about some small successes with breastfeeding.  He'll latch on and suck at times, once taking most of a feeding that way with the help of our childbirth educator, the "Queen of Latch".  That's been an up and down struggle, but feeding has not been a problem, as the team observed.

We also met with his pediatrician, three days after coming home. This is the family doctor we feel very grateful for, who attended a meeting that nurses said they'd never seen a family doctor attend.  Not having seen Asher in two weeks, he looked at Asher and us with a real happiness for what he saw.  We'll treat him like the normal baby he's behaving like until he gives us reason not to, said the doctor.

This was the first of multiple times this week when the "m" word was offered up.  I can't think of anything I'd experienced in my life that qualifies as miraculous.  We've all heard stories of people beating long odds, but I've never had long odds to beat.  To tell the truth, my life has been pretty easy up until now.  I'm a white, middle class male in the US of A.  Miracles have not been required.  In his short life, Asher has done something most will never have the need - or the opportunity - to do.  It seems like he's fought back from the dead.

At the same time, that fight has begun to fade from my consciousness, stored away as something irrelevant to our lives now.  In just a week, it's become so distant.  Did that really happen?  Looking at Asher today, you'd never know what he's been through.  His doctor told us that any differences in him from other babies were so minimal they weren't worth mentioning. 

Though this feels and sounds like a happy ending to Asher's story, that's not exactly the case.  This week marks the beginning of the second act, one that will play out on a timeline much longer than the first.  We won't know what, if any, consequences he'll have from the hypoxia until he begins to pass developmental milestones like walking and talking.  Coming home is not a happy ending, but it is happy.

Homecoming

Time has moved at a glacial pace since Asher was born.  Days have been weeks in this world, and our time in transition was no exception.  After only 24 hours, it felt as if we were never going home.  The spot on our room's whiteboard for "Possible discharge date" remained blank.

On Saturday, one of our favorite nurses who knows us well, came to our room and gently kicked us out.  She reasoned that Asher was ready to go home, has been ready for days, and only needed to hear that his parents were ready.

I felt very ready, but Marissa was understandably nervous at the thought of having him home by ourselves.  We'd become accustomed to the safety of the hospital, knowing that if anything went wrong, he would be taken care of.  Chances are slim that anything like that would happen, but they were slim the day he was born, too.

Still, as our nurse put it, it was finally time for us to go start our family.  In transition, we got in the rhythm of feeding, pumping, changing and sleeping.  We worked on breastfeeding, which was difficult and still needs a lot of work, but we made some small steps in the right direction.  Before we left, we watched a few NICU videos on topics like baby CPR, which didn't help Marissa's anxiety on Sunday.  I thought she might hyperventilate as we loaded him into his car seat, but we all made it into the driveway in one piece.

Coming home seems to have brought Asher out of his shell.  Maybe in NICU he was just shy, but no longer.

At least he feels comfortable telling us how he really feels.  I think he also feels more comfortable in his own clothes.

"Baby, I got your money"

The last day has felt oddly normal.  Asher cries when he's hungry, messy, or gassy.  He makes cute little noises and faces.  I change diapers, I clean, I warm bottles, and I do it all over again like so many other parents.  Life has been so abnormal for the past four weeks that now, with things the way they should be, I feel a little out of place.  Being calm and stationary have become foreign to me.

At the beginning, I remember feeling like I was living someone else's bad dream of a life.  The first days were an out-of-body experience.  Slowly, I came back into my body, and began to live that dream.  It became lucid.  Yesterday, when we pulled in the driveway after four weeks, I woke up, though once again not to the life I remember.  It's been a strange start to parenthood, one that at times has left me feeling robbed of the experience.  At least now, it feels like we've truly started.

"Dramatic improvement"

A lot has happened in the last few days, so much that it's become harder to post regular updates.

On Thursday morning, we spoke to Asher's neurologist for the first time over the phone.  He'd been on vacation and hadn't seen Asher in the last week.  Visiting the NICU after his return, the doctor told Marissa that, at first, he thought he had the wrong baby.  Asher was unrecognizable to him.  He shared that he was glad he didn't attend the meeting that had been so difficult for us, since he was very pessimistic at the time and would have only added to the already overwhelming negativity.

The neurologist discussed with us Asher's second EEG.  Results from the first of these tests had created the sense of pessimism in that team meeting.  That EEG had been taken with Asher's phenobarbital levels very high, probably around fifty, whereas this test was taken with a level of seven.  In the neurologists' words, Asher's new EEG showed a "dramatic improvement".  While it was not completely normal, the doctor sounded very pleased with the results and optimistic for his future.  He made us no promises, and emphasized that only time will tell how things such as Asher's IQ will develop, but he confirmed what we were already starting to believe.  The worst case scenario for Asher is very unlikely.

Clearly, this was wonderful for us to hear from the closest thing we have to a crystal ball.  At the same time, anyone who's seen Asher in the last few days could have seen how much he's improved, so the doctor's words felt more like an official validation of what we already knew.  Later that day, we went back and looked at some of the videos from Asher's first week.

At the time, we were just thrilled to touch and hold him.  I remember enjoying the feeling of his limp arms draped across my stomach, even as I knew it was a symptom of his problems.  Today, I watch these videos and my heart sinks.  They sadden me, though they might not if Asher wasn't now behaving like this:

Our doctor from the palliative care team, the one who'd made sure to inject some optimism in that otherwise awful meeting, left a voicemail for Marissa today.  He described what he's observed in Asher as "incredible", and offered him as an example of the importance of maintaining hope in the face of odds that seem hopeless.

*****

On Thursday, the NICU called to say they had a room available for us to start the process Asher has been healthy enough to start for days now - transition.  As I write, we're starting our second night staying in a hospital room, the three of us together, with the goal of having us finally take the lead in his care.  As of now, we haven't been given a discharge date.  A few days ago, Asher's nurse thought we'd only be in transition a day or two, though given that we've been here now for 24 hours with no word, that seems unlikely.

Transition had seemed a good opportunity to work on moving Asher away from the bottle and toward nursing.  I figured we'd have the time and resources, like lactation consultants, available to us to allow us to hit this goal hard.  This was my thinking before I'd seen Asher try to breastfeed.  He's turned, thankfully, into a very squirmy baby, which makes nursing difficult.  Feeding from a bottle is also much easier, and is the only thing he knows.

Really, breastfeeding would benefit Marissa more than Asher.  She pumping every two hours, and because of the the engorgement, sometimes for an hour at a time.  That doesn't leave much time for everything else in her life, including sleep.  With that and everything else she's been through, she's physically and emotionally frayed.  If she were able to breastfeed, she could cut out the pumping, the labeling, the cleaning, the massaging, the hot cloths, the cold cloths, and probably the pain, plus get more time with her son.

At the same time, she's not the first person to go through this.  Painful as it is, it's a normal problem, and in that way a welcome change from the abnormal problems we'd grown used to.

Face

We are the proud parents of one hungry boy.  Yesterday, Asher took 95ml from a bottle from Marissa during the day.  Today, he got as high up to 120.  The feeding team monitored him with a stethoscope and said he sounded great.  Things were going so well that the feeding tube was removed, and he is eating completely on his own.  When I arrived yesterday, he was sleeping, and I saw him for the first time without obstruction from tubes, tape, or wires attached.  Just his beautiful face.

Religion is mostly foreign to me.  After my grandpa died when I was about nine, I stopped going to church.  My dad describes himself as a recovering Catholic, and to this day I can't tell you much about my mom's beliefs beyond the fact that she believes in God.   The idea of God as portrayed in most religious texts has never been one that computes in my mind.

Yet I know what I feel.   A couple of years ago, I was waiting out a heavy downpour in a shelter on the Appalachian Trail, talking to a group of backpackers and trying to keep my dogs from making trouble.  Once the rain dispersed, I left the shelter and hiked to steep section of trail called the Jump Up.  My favorite time to be in the mountains is right after a hard rain, as the humidity clears and collects into fingerling clouds that nestle into the crevices of the land.   Such was the scene as I arrived at the Jump Up that day.

That had been the last time I saw God. A power far greater than me surrounded and enveloped my being on that mountain. Parts of myself that I'd never met before came to the surface. The Earth was giving me a big ole bear hug, and I could have spent the rest of that day in its embrace. I felt whole.

Then, last week, my son looked into my eyes, and it happened all over again.

Contained in that face is the power of something far great than me.  It surrounds me and fills in the gaps.  Like a campfire, I could stare into it for hours, not fully understanding why, watching as it flickers and dances.  Maybe it's love, but it feels like God.

*****

The wires came completely off today, along with diaper and clothes for Asher's first bathing by his dad.  I couldn't resist a picture.

Poor kid got his dad's gut. 

The good news of the day was that Asher can certainly cry.  Unfortunately, discovering this came at the expense of an unsuccessful first attempt at breastfeeding.  I wasn't there, but according to Riss, he wanted to latch on but couldn't quite do it, hence his frustration.  Given that his initial attempt at bottle feeding was also tough, I don't think this should be too surprising.  He may just need practice.  Riss took it hard though. Between the illness, hormones, and desire to get him home, she's been strapped into an emotional roller coaster lately.

Hopefully, starting transition will help her.  We're now on the waiting list, and we've been told that from there it should only be a day or two until we're home.  I hope when transition starts, being together all day for the first time will really help her feel like Asher is hers.  Motherhood came with a beginning that was unfair to her.  Pretty soon, I think we'll get to make up for some of that lost time.

Mother's Day

Marissa hasn't gotten what she really wanted for Mother's Day - relief from her mastitis and thrush.  Nerves have worn thin between us in the last couple days, due in large part to the frustration this is causing.  The impatience to get him home is also building, and Marissa's problems are only slowing this down.  He looks so normal now, it makes me feel like a horse at the end of a ride.  I can see the barn, and I want to run for it.

I'm not the only one who thinks he looks like a changed baby.  His new neonatologist stopped by to echo that view, saying the early reports and what he sees now seem pleasantly incongruent.  Another EEG would be done next week, he said, once Asher's phenobarbital level gets below 10.

The one thing we're still hoping for is crying. Yes, crying.  Find me the parent of another two-week old who wants that.  Today's neonatologist, the nurses, and Asher's grandparents all seem to be less worried about this than me.  He's making other noises, so it's not as if he doesn't have a voice.  We know he feels pain, as in the circumcision, by the look on his face.  He could just be a mellow like we're told his mom was as a baby, or like our dog Jhana, who Riss pointed out barks about twice a year.

If he were going to cry, it seems his circumcision yesterday would have been the best opportunity he's had.  Instead, his mom did all the crying.  Perhaps to help her through, the doctor, who's also Jewish, began humming a song I've heard in synagogues before.  As he hummed and worked, Marissa joined in.  The comfort and the connection between two near-strangers provided by their faith made the event feel like more than a simple medical procedure.

*****

Though Marissa didn't get what she wanted for Mother's Day, my mom got the only thing she hoped for.

She's the last of the grandparents to meet him, which I think was quietly killing her.  However, she's also the first person outside his parents and the nurses to hold him.  It seems like she's been waiting to be a grandma since I made her a mom back in 1982. As a child, I remember her being very protective over my reproductive parts. Her fear of having no grandchildren was apparent every time I got unspeakable poison ivy or was hit in the groin with a soccer ball.  That fear must have felt like it was nearly realized the day Asher was born.  She admitted she was nervous to meet him, not knowing entirely what to expect when she saw him.  By the time she left, I think she felt very happy and as hopeful as Asher's parents are.

Fending off the paparazzi

Asher hit the big time today.  I woke up to find this on the front page of Haywood County's newspaper:

One of our co-workers entered Marissa in a Mother's Day contest on Facebook.  For having the most likes of her pictures, she won the grand prize of an article about her and Asher in today's paper.  Other than the ironically placed article about child hunger (see below) next to Asher, it was a really nice, well written and aptly titled article.

We've had two very important days to finish out this week. During the day yesterday, Asher took five, then ten, then fifteen milliliters of milk from a bottle. The last of these was the first chance I've had to feed him:



After we left yesterday, he decided to blow those numbers out of the water, taking 70 milliliters - an entire feeding. This morning, he first managed thirty, then seventy, then another thirty milliliters for his mom this evening. It seems that Asher likes to eat about as much as his dad does.

I haven't heard this from anyone at the hospital, but at the rate Asher's going, I would not be surprised if he were home toward the end of next week. Maybe that's wishful thinking, but we have been told that the main thing keeping us from beginning our transition is Marissa's pumping pains.  Once that clears up, we'll be able to try moving from the bottle to the real thing.

*****

My sister left last night after spending two days slaving in our kitchen, packing our freezer with squash and sage lasagna, stuffed peppers, and sweet potato shepherd's pie. She also took great care of Marissa, who's been miserable at certain points with mastitis and thrush. At the same time, my dad unexpectedly popped in for a visit yesterday to meet his first grandson. Every now and then, I'll get a call from him that starts something like, "Hey, what are you doing in a couple hours? I'll be flying through Asheville." He's a pilot, so that's a very literal statement, and his job enables him to pop in from all the way from Ohio every so often.

Marlin White is not an emotional creature. I inherited many things from him, but my empathic and emotionally therapeutic abilities were not among of them. He's old school in many ways, whether he's exercising his second amendment rights or sitting at home watching the History Channel in his underwear.

Given this persona, his reaction to Asher's situation has been perhaps the most interesting of anyone in our family. Praise from him needs to be earned, and, like many, he doesn't always know how to approach others going through tough feelings.  This makes messages he's been sending, like the one below, all the more notable:

An experience like this could cause people to grow and change, to do things they hadn't been able to do before. Or, maybe it provides people an opportunity to show sides of themselves that had been there all along.

Hungry man

In the middle of last night, I woke to find Marissa trembling and crying in pain. She's been fighting a case of clogged ducts in her breasts which led to a mastitis infection. If you've never seen seen this, like I hadn't, imagine a really bad bout of the flu or heroin withdrawal, only it doesn't last quite as long. She was hot and cold, soaking our sheets, without much that could help her.

Since we were both up much of the night, I'm drained and can't muster up the energy for a post worthy of how good our day was. In short, I don't think anyone doubts now that Asher will be feeding on his own very soon. He drank from a bottle four times today, including once with me, and took a little more each time. My dad and sister were in town to see all this. Dad also modeled a nipple-less sports bra for us - tune in tomorrow for pictures.

When a baby gets ready to leave the NICU, mom and baby will spend time together in the transition unit getting ready to go home. These are rooms that help moms learn about any special needs the baby might have and to see how the baby responds to a less medical environment. Asher has been doing so well that transitioning was mentioned for the first time today. We might be doing that in the next few days if it weren't for Marissa's infection, but it sounds like this is coming soon regardless.

More to come tomorrow, including pictures and video of Asher taking down a big gulp of milk with me, then begging for more.

Teacher

As the days go by, it's become easy to forget that there are questions about Asher's future abilities.  He looks and acts more normal each day, even with a phenobarbital level that's fifty percent above what's therapeutic.

 Today, he didn't just make eye contact - we practically had a staring contest.   His deep blue eyes opened as wide as ever, and it seemed he was scanning my face as intently as I was scanning his. He would also take time to look around and absorb his environment. As he did, I could see his mind, supposedly damaged beyond repair, processing.

From the department of feeding, Marissa reports Asher showed a gag reflex today. For much of the time I was there, his nasal cannula, already flowing low, was out of his nose because Asher had knocked it out (a good sign in itself). He was breathing just fine without it, and we didn't even bother to fix it while we held him. The IV going into his belly button was taken out last night, and he's now being fed completely by his mom's milk. We were given no word on when a bottle would be tried again, but I'm guessing it will be soon.

Since none of Asher's doctors could attend, the meeting on Friday was postponed. That's fine by me.

I've written before about the sense of community that we've developed and strengthened over the past week and a half. The response of everyone, young and old, with and without kids, has left us speechless. One of the great surprises in this regard has been the sub-community of NICU parents that has come forward to share their stories with us.  Some of the most heartfelt words and kindest offers have come from these parents.   People I've never met have written at length to share their stories.  It's apparent that learning about Asher often takes these parents back to that time in their lives, a time like we're going through now.

No two situations are exactly the same, so these parents are often careful not to compare.  But we all seem to have shared a similar pain and fear.  It's a pain and a fear that I didn't know possible prior to Asher's birth.  One of these fathers, a person I respect a great deal and whose family has been very supportive of us, echoed some of my earliest feelings from this ordeal.  Like me, the father said he initially felt sorry for himself.   I remember in those first days, as I clutched to preconceived notions of what my family should be, among the forest of emotions, I pitied myself.

This father also helped me recall and solidify a thought we had in common, one that signaled the beginning of our recoveries from self-pity.  In his words, he began to believe that his child would be his teacher.  For me, should Asher have special needs, being so close, so inside of this would be completely novel to me.  It would be a completely new way of looking at life, one that scares me less each time my son looks into my eyes.

Power or bliss

Asher was surrounded by a group of very happy nurses when I walked into the NICU this morning.  They informed me I just missed a very exciting 15 minutes.  Two of the women were from the unit's feeding team, and had been testing his ability to suck and swallow.  Not only had they gotten Asher to give a good suck on a finger, but, more importantly, they could hear swallowing both through a stethoscope and with Asher simply laying there in front of them.  When I told them he'd already taken some milk from a bottle, they advised we slow that down, not wanting to make the experience unpleasant for him or risk getting milk in his lungs.

His nurse today worked with him on his second and fourth days on the unit.  She hasn't seen him since then, and seemed pretty amazed at his progress in that time.  I loved listening to her talk about him.  Professionally and personally, she seemed so hopeful for him and so invested in his care.  The look of excitement on her face was one I've seen more and more from the nurses in recent days.  It tells me the progress I'm seeing in Asher isn't just the product of my parental pride.  Others are seeing the same thing.  It's real.

He continued taking small steps in other areas today outside the sucking and swallowing.  He's a little more able to hold his hands up by his face like babies do.  He's tracking things with his eyes and looking when someone says his name (he already knows his name!).  He pooped mustard.

Marissa called me in the afternoon when I'd gone back to work.  Our case manager was asking her about scheduling another team meeting like the one we had last week.  About half way through this conversation, I became aware of how much the idea of this meeting scared me.  The last one, when I was told Asher would likely be "moderately to severely disabled", was the hardest thing I've done in the past week.

Since that point, I've seen nothing but progress, been given nothing but hope.  It's no wonder I found myself saying I didn't see the point in such a meeting.  Part of me would rather live only with the hope of what's in front of me rather than understanding the facts of our situation.  Knowledge is power, but ignorance is bliss.

We're meeting Friday morning.

A Letter

Dear Asher,

First, let me say I'm very happy for you and all the progress you're making. No one can deny that you're a fighter. You're cute, charming, and an inspiration to hundreds of people. Everyone's pulling for you, including me (just don't tell my boss).

However, I must say that you're making my job quite difficult. Your consistent, daily progress, giving nothing but hope to those around you, makes it very hard for me to argue my case. For example: who would believe that there is reason for pessimism when, just this morning, you drank FROM A BOTTLE nearly two days ahead of schedule.

I don't think I'm asking for much, only that people consider all sides of the argument. Even if you don't regress, just slow down a bit. Take a break. You've earned it. Plus, it just might save my job.

Regards,
The Devil's Advocate

"Gale?... He smiled at me."

I think I fell in love with my son today.

I've loved him since before he was born, or at least the idea of him.   Today, though, he really became a person to me when he laid on my chest and looked up at me.  I wanted to crawl inside of him.  Everything about that face - the innocent eyes, soft cheeks, the lips that I will claim with pride, thank you very much - is perfect.

I thought I'd need him to say "Hi, dad" to feel like I had a relationship with him, the one thing I wanted more than anything.  Turns out I just needed his eyes.  And for that, all Asher needed was to get his phenobarbital level down to double the therapeutic amount.  Every day, he looks a little less doped, and a little more like your average baby.

Which he's not.  On good days like this, I have to remind myself of that.  I start imagining a life with him like I'd imagined two weeks ago.  It's hard not to when those eyes look into yours.

It's also hard when you see nothing but progress.  Other than the wires, two big things that would tell your average baby ignoramus, like myself, that something's a little off about him.  First, he's floppy and slow moving, even by newborn standards.  He doesn't grab your finger like other babies, and he has a hard time holding his arms up next to himself when he lays on you.  Second, he still doesn't cry.  It will be interesting to see how much these things change as the sedative levels continue to drop.

He's starting to poop after every meal, just like a baby should.  After his tube feeding today, my hand supporting his butt could feel the rumble in his pants.  As exciting as poop can be, there's nothing like baby poop, especially from a baby that hasn't been doing it.

Tuesday might be the start of a big test - feeding orally.  Everyone of us have secretions like saliva and mucus that get into our throats.  A healthy person will simply swallow these secretions without thinking about it.  For most of the past week, those secretions have stayed in Asher's throat, which you could hear when he breathed.  The fear is that this is because the part of the brain responsible for involuntary actions, like swallowing, is damaged.  In the last two days, though, he's been breathing quietly, giving me hope that he's started swallowing.  If he can swallow saliva, maybe he can swallow milk.

In closing tonight, I'd like to acknowledge the prevalence of pictures of my chest on this blog.  It's certainly been prevalent in Asher's short life, as evidenced by the hairs we have to pick off of him every day.  Some have said that they've seen my nipples more than any man outside marriage.  To that, all I can say is, you're welcome.

Warmth

Today was quiet and relaxing.  There seem to be fewer people in the NICU.  Asher slept most of the day, opening his eyes only a few times briefly.  Some positives of the day include Asher handling increased amounts of milk through the feeding tube, having fewer phlegmy sounds in his chest, yawning, stretching, and all around cuteness.  Much of our time was spent visiting and laughing with friends we feel very grateful for.

As I type with him on my stomach, I feel like he's given me his first, honest-to-goodness eye contact.  We've tried to be quieter and stay out of his face today, and it seems to be working.  At work, I sometimes use an analogy of getting a cat to come to you from under a porch.  The harder you try, the louder and scarier you get, and the further the cat gets from you.  We wanted so badly to interact with Asher this week that at times I think we scared him away.  Backing off by talking to and touching him less feels like it's helped lure him out a bit.

There was no big news on tests or milestones today.  Dr. Allen, Asher's geneticist, stopped by to discuss some things that he'd be looking in his testing, though so far nothing has been found to explain the "why" of Asher's condition.  Genetic testing is improving rapidly, and might someday be able to provide answers, but not now.

This is the most unexpected and important thing that's ever happened to my family.  Yet somehow, a need to explain why or how this happened has escaped me.  I'm glad for that, as it's something we'll likely never know, though that doesn't always keep people from trying to explain the unexplainable.  What's hard for me is not the "why" of the past, but the "what" of the future. Both seem unlikely to be answered.

I wondered today if Asher would ever have a girlfriend.

Our nurse mentioned that she had been in the NICU the day I came upstairs with Asher.  I think I talked to her, but she was only vaguely familiar to me. As she described what I looked like at the time, and I reflected on what those first hours were like.  Devastation.  Dissociation.  Questions to her about that morning that I couldn't quite form went unasked.

I remember I was freezing, and confused as to whether it was the room or me that was cold.  As Brad sat with me, I told him they'd get him a blanket, like they did for me, but he didn't need it.  Tonight, I'm sitting comfortably in nearly the same spot, shirt open, Asher on my chest.  We're both warm.

Yin and Yang

Today started about as rough emotionally as yesterday ended, with lots of thoughts and feelings left over.  I began to question my plan to return to work today, but after saying goodbye to Riss' parents, I decided to give it a shot.  This was my first attempt at trying to integrate my old life into my new identity.

The day went well, thanks in large part to the caring people around me at the high school.  Slowly, I began to feel like a therapist again, and got some good practice at telling kids what had happened.  I didn't feel I could hide it from my kids, many of whom were very excited for the baby, so I decided to be up front.  The day ended with the client who had been very excited and who I knew would take it hard, but who processed it well.  A good day's work was done, and my head had cleared a great deal from the day prior.

On the way to the hospital, I got a list of good news from Riss.  The physical therapist explained why my family and many of you have been saying - not making eye contact is normal.  In fact, in Asher's case, it's probably a sign we're overstimulating him.  I think I'd have a hard time empathizing with any newborn, let alone one who's been though what our son has.  It's easy to forget that just opening his eyes, being stroked, or hearing us talk can be exhausting for him.  Looking away from us might just be his way of saying "Dude, back off."

We're going to lay off the oral feeding for a few days, giving the sedatives more time to work their way out of his system.  Hopefully, he'll be able to latch on better then.  I have to wonder how much of this is a break for Asher, and how much it's a break for his parents.

Physical therapy went well for him, and the therapist felt Asher was responding to the interventions.  He didn't have a single seizure today that we could see.  The nurse swears that, ever so briefly, she heard him cry.

Best of all, our geneticist had ensured that Marissa and I are not related.  You can imagine my relief.

Small things gave me happiness today.  I took Asher's temperature under his armpit.  He didn't like it, and let me know by fighting it, which I liked.  Asher has poor muscle tone - that is, he's floppy.  Feeling him tense up is a welcome change.  I also felt like there was progress in his sucking response.  Holding a wet cloth in his mouth to wipe of his spit, he quickly began sucking.  While that's good, it's only half of the equation.  He also needs to swallow.

As with the eye contact, we're still learning Asher's language.  While Marissa held him today, he began moving his head around, making us wonder if he was uncomfortable.  I was ready to put him back in the bed, not wanting to overstimulate him.  With our nurse's help, though, we soon figured out he was rooting.  Mom's producing a lot of food, probably enough to feed the entire NICU, and Asher could smell it.  Since it's an involuntary, instinctual response, it gave us hope that this part of his brain is still functioning.

He's very different depending on whether it's Marissa or me holding him.  On her, he's active, and has tended to stay awake the entire time.  Mom's exciting.  With me, though, as long as he's comfortable, he's more relaxed.  Today, he quickly fell asleep on my chest.  I was right there with him.

The last two days have been an exercise in managing expectations.  Hope is so necessary in this journey, yet within it lies the seed of something destructive.  Left to grow out of control, it can come crashing back down on us.  When that happened yesterday, it was hard to see the hopeful things that were still left in front of us.

Our nurse put it best.  Asher didn't have a bad day - we did.  As I felt myself getting too high again today, I asked her to list some things that might happen on a bad day for him.  He might not handle the milk well.  He might not swallow.  Seizures could come back.  He will have bad days, she said.  Today was not one of them.

Reality check

After two good days, I suppose it was time for a reality check.

The day started well, still riding on the first two days of holding Asher and the hope of continued improvement.  I called Asher's nurse for an update, and was greeting by more hope.  Today, we'd try to start feeding orally.  This is the factor that most affects when we will be able to bring him home.  She said that his oxygen levels had needed to be increased, but she spun this into gold, noting that he seemed to need less oxygen when we're near him.

More encouraging, the nurse reported that Asher had his eyes open most of the morning, looking around.  This being one of the things we'd been hoping for the most, I hung up and got us moving toward the hospital.

After spending time nuzzling and changing Asher's diapers, we left our boy for a conference room filled with doctors, case manager, a chaplain, and our family.  Yesterday, Asher had an EEG, measuring neural activity, and an MRI, which took a picture of his physical brain.  The results would give this team of talented people direction in how to proceed.

While there were some improvements, Asher's brain activity is still much lower than you'd expect in a normal brain.  The somber tone of the doctor told us what this meant in his eyes.  His MRI was better than the EEG, signaling there might still be room for improvement, though this also showed physical damage to Asher's basal ganglia, thalami, and "white matter".  On Sunday, the doctor had said possibilities range from Asher showing few or no effects to being severely physically and mentally disabled.  Today, he narrowed that range to between moderately and severely disabled.

My heart retreated into itself.  It felt like a sentencing.  After a long dialogue of questions and answers, one doctor must have had enough of the cloud opposite of him at the table, and began offering us reasons for hope.  The MRI was better than expected.  There is still sedative in Asher's system that might depress his EEG.  Newborn brains are very plastic, and can recover from things other brains can't.

The wave of the last two days had crested with the morning's hopeful phone call, and by the end of the meeting it had crashed on top of us.  We pulled ourselves back out to Asher's bedside and tried to gather some excitement for a possible feeding.  A bottle of breast milk in hand, Marissa gave Asher his first taste of the best food a mother can give.

Like so many experiences of the past week, though, this ended ambiguously.  Asher tried so hard to suck at times, but couldn't get enough of a latch on the bottle to take in much milk.  We resorted to Plan B - a feeding tube through his nose and into his stomach - and will try the bottle again tomorrow.

Then came time to hold Asher for the third day.  When the nurse picked him up to hand him to Mom, his eyes began to open, and we began to hope for some quality bonding time.  As the holding went on, though, something felt wrong.  Asher wasn't making eye contact with his mom.  He seemed distant, searching with his eyes but unable to connect.

My mind began to slip back into the place that's been so dark for me this past week - the future.  I wrote this week that what I want most is a relationship with my son.  Marissa echoed this.  Eyes open, we had what felt like our first opportunity to connect with our son, and we were denied.

I think I began to lose it first, but really Marissa and I crashed at the same time.  Like most supportive couples, when one of us is shaken, the other is the rock.  Even in the early days of Asher's story, aided by exhaustion, Marissa was my emotional rock.  I don't think we've ever had a harder time finding the rock than we did today.

Then a terrible thought came through my mind.  I didn't want to hold him.  Many things have happened this week that I never thought possible, so in that way this was nothing new.  But it hurt to feel this way.  I knew how it was hurting Marissa, and could see how it felt this was getting us further from what we want most - that relationship.  Marissa and the nurse could see my hesitation when they asked, so they took the pressure off by offering put his head under my chin.

I held him, but I couldn't help but try to engage him.  Somehow, it was less painful for me when I was denied than Marissa.  Still, perhaps because of the emotional exhaustion, the holding today felt awkward, like a middle school dance.  I was worried about him being uncomfortable, and returned him to his bed before I had to.

There's a Mother Teresa quotation on the wall leading into the Mission NICU:  "Be faithful in small things because it is in them that your strength lies."  A phone call to my family reminded me that there were plenty of good, small things that happened today.  His eyes were open for hours.  There was almost no seizure activity.  The MRI was... not terrible.  But today, one small phrase - "moderate to severe" - started us down a path that negated many small things.  Tomorrow, we'll gather our strength.